Ryan's story

Ryan was diagnosed with Stage 4 High Risk Neuroblastoma N-MYC amplified in July 2008. He was out of treatment for just over a year when in November 2010 our lives were again turned upside down when we discovered the disease had returned in his bones and bone marrow. After a year of treatment re-staging scans in November 2011 showed that he had again achieved remission.

However just 3 months later, in February 2012, end of treatment scans gave us the devastating news that the disease has returned, this time with a tumour near his spine. In March Ryan started 4 weeks of radiotherapy followed by chemotherapy which is on-going. Re-staging scans in May and August showed no evidence of disease. On the 4th September 2012 Ryan received treatment in Tubingen for a haplo-identical stem cell transplant. He is a happy, active boy who is now enjoying life to the full.

Tuesday, 4 September 2012

We have arrived


We arrived in Tubingen yesterday at 23.45 local time after leaving our home in Exeter at 9am.  Ryan was as good as gold on the journey, he did occasionally moan about how boring it was and kept asking how much longer but mostly played happily on his new ipad (kindly given to him by the local charity Richard's Wish) and watching Power Ranger movies (loaned to him by Adam).  He was asleep when we arrived at the house but as promised we woke him so that he could see the house quickly and he went straight back to sleep.  The house is beautiful, just over a year or two old I think and very clean and modern.  This is where either Gareth or I will be sleeping while Ryan is in isolation with the other of us.  We will take in turns staying with him, even though the nurses tried to talk us out of staying in hospital as we will get very little sleep but this is little price to pay although of course it will take its toll.

Today we had to go into Klinik at 11am for Ryan to be checked and for me and him to have more blood taken.  One of my tests needed repeating and Ryan's tests were just routine. Then he had to be checked over by a doctor and the inevitable paperwork had to be completed.  Then we were free to go until 3pm when Ryan was due to be admitted to hospital.

We have met the other english families and were really pleased to hear that they are both happy with the care that their children, Vanessa aged 12 and Jamie aged 7, have received.  They have both come here for the same treatment as Ryan.  Vanessa has been here approx 3 weeks and Jamie approx 2 weeks and both are tolerating the treatment well.  This obviously doesnt mean that they have sailed through it but does mean that so far there have been no complications and everything is going to plan - we hope and pray for the same to be true for Ryan.  Both families are fundraising with NB Alliance UK and we all have a lot in common and it is certainly good to see some friendly english faces.

To cut a long story (afternoon) short in summary we didnt end up getting to see the doctor until after 7pm and so after some discussion it was agreed that we could all go back to the parents house for one more night and return to the unit in the morning.  Initially Ryan wasnt happy about this as he said he didnt want to be woken up early and rushed into hospital and so he wanted to stay in hospital??!! but somehow he managed to negotiate a 9am arrival instead of 7am! Such a grown up boy!

2 comments:

  1. We have been following ryans progress & updates and are overwhelmed to read nothing but positive results right now. I know any 'mum' would do what you are doing for your precious little boy, but would like you to know that our thoughts are with you also whilst your under going this 'unpleasant' treatment to save ryan.
    Our thoughts and prayers are with you every day and we truly pray that this treatment will provide a complete cure for your darling son and enable you all to look forward to a very long and happy future together as a family!
    Sending our love and prayers from exeter!!
    The Beaumont Family (liam elliotts mum and family) x

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  2. Very best wishes to Family Edwards from Family Bird. x

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